Surgery - May 10, 2024 - spending a little time with Dr Costantino and Dr Tobias

General
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Ha - I flip Eagle the bird!
I’m still occupying Middle ground,
It’s a good day to be alive.
Irish eyes are watching over me… Blessed!
Let the Whirl Wind we call Eagle begin!
W- walk
H-hydrate
I- ice
R-rest
L- listen to Dr. And your body

W- waiting
I-impatiently
N-for normalcy
D- from this DEVIL- we call Eagle.

I have been quiet about my third surgery date since this journey has been an uphill battle for me with insurance and rescheduling. I didn’t want to jinx myself😂

I had my surgery Today- Friday at 7:30 styliodectomy with jugular decompression, C1 tp shave, digastric… (Possibly forgetting something lol)
With the one and only (for me) the great team of Dr. Costantino and Tobias (possibly Dr Gordon not sure he’s been in my paperwork since March 6, I’ll know more when I talk with Dr C )
So far everything is good. I’m staying overnight in ICU @ Northern Westchester. The hospital and staff have been wonderful :star::star::star::star::star:!
Toi early to tell, I’m hooked up but have been on my feet already, eaten liquids and kept it down. I have dinner ordered.
So far so good.

I’ll post when I know more and probably rest for a few days

I cannot thank everyone in the group for all of the support, guidance and kind words. I appreciate everyone who has gone though this already- sharing your experiences. Everyone is different, but I am confident and staying positive!

UPDATE-
Good morning! Update…
Going on day 4, I’m worried the honeymoon may end-i hope it doesn’t. Things are going surprisingly well I think. I’m only taking Tylenol and only took it 2x yesterday. I’m able to eat, drink and walk without any problems. Yesterday and today my voice has been very weak in the morning but comes back. A slight sore throat but I think that is where the styloid was poking me . So weird, Dr.C discharge papers didn’t mention anything about ice . I just read my discharge papers yesterday, lol. Yesterday afternoon I stopped icing to see how I would be. I’m ok and actually think it’s gone down. My face ear and neck was quite numb but it’s coming back slowly. I walked 4 or 5 times yesterday totaling about a mile. Thank you mother nature for cooperating so far, I was dreading my recovery weather forecast. The only day rainy was Sunday the day after I came home, which was ok . I don’t see any major difference yet. But I’m being overly cautious so I don’t get my hopes up. But I am in a positive space right now and hope it continues in this direction. Thankful that Jules was able to get insurance to approve surgery and that I was patient enough to stay the course after the surgery date cancellations with Dr Costantino and Dr Tobias. I feel so bad for everyone who had a not so positive experience with his office. I am so fortunate they return my calls and I get along- I feel very well with Dr Costantino and Tobias. I know it’s disappointing and frustrating with some of the experiences some of you may have had, but the office was going through a perfect storm, with Dr C right hand Kelsey going out on maternity leave, Claudia going out on medical and Dr. C getting injured himself and having to recover. It was all bad timing. He, like us, is just a person, he got hurt, and needed time to heal. On top of that he had to train new people to get his office up to speed and running more efficiently. We as a group have put him in a very “in the spotlight position” he is being sought after because of his skills and his trail blazing techniques and positive outcomes, not just in Eagle and Venous outflow obstruction. Yes I am a fan and feel I’ve been blessed that I had the honor of being under his care. Hoping everyone can have an experience that I have so far.

3 week update…
All is going well, I can’t complain too much. I only take Tylenol at night and it’s probably just a pacifier so I can get my head comfortable to sleep. I’m no longer in the recliner thankfully. I am able to sleep in the surgery side and am getting between 6 -7.5 hours per night though it’s not all the way through but I’ll take it. The worst thing for me right now is the accessory nerve has challenged me using my right arm and shoulder but it’s getting better, I have been doing some light exercises for this and throwing the softball against the rebounder has helped quite a bit. I have about 75% use and range of motion though the arm get tired easy. I found using a rolled towel under the arm helps especially on the chair or couch. And I’m the beginning I was using a posture brace to take the pressure off. I am having nerve zaps but that’s a gimme. My neck bothers me a bit, and some headaches happening from a pressure point in the back of my head, but my surgical notes did say that there was occipital Nerve involvement. I do have lower facial numbness and ear numbness but it’s getting better by the day. I have had 2 slight semi black out feeling bending down, but no where near as bad as it was. My brain fog seems to be lifting-I am thinking clearer and my word searching is better I think. My long list of symptoms is smaller and getting better day by day. Today was my first day driving again-yay. Though I did get tired quick. My swallowing is better, no choking, coughing or aspiration episodes (so far).
I walk everyday, eat clean- no dairy, sugar, carbs -though I do cheat from time to time with a sweet treat. There’s probably more to report but as of right now I think I’m going in a positive direction. Dr C is pleased with my progress, my scar and how good the shoulder is. My next follow-up is at the end of June- hopefully I’ll still be going in the right direction. I can’t thank Dr C &Tobias for their stellar skills and care. Also thank you all for your support and guidance.

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I’m so happy for you! Wishing you a speedy recovery. Looking forward to hearing about how you are progressing when you feel up to it. It is an uphill battle and you are obviously a tough cookie. Well done you.

I met with Dr. Tobias Wednesday and now waiting to get on the surgical schedule and get all the insurance sorted out.

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Dr. Tobias and Dr. Costantino are wonderful! I fought for them and only them. I wouldn’t even consider another. Good luck I hope you get in the schedule sooner than later.

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So glad that everything has gone well and that you are finished up with the surgery. I am scheduled for surgery with Drs. Costantino & Tobias on 6/3, so that is coming up soon. I am very happy to hear that your experience has been so far, so good! Thank you for updating everyone on how things are going. I hope that you have a wonderful & speedy recovery!

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@vap - HOORAY that you have a surgery date & it’s coming up soon!

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@lilwider - Love your poem!! Very well done especially since you were just out of surgery!! I don’t think my mind was clear enough to write something like that for several weeks post op. :rofl:

I’m so glad you were finally able to have your surgery & share the date with us, too! May your healing go extremely smoothly & as quickly as possible. I, too, will look forward to your updates, but do take a few days for yourself first so you can get a good start on recovery.
:hugs: :pray:

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Wonderful poem!

You’re right in my backyard. Last time I had to be hospitalized it was in Northern Westchester and it’s our preferred ER. Glad to hear that the procedure went well

Sharon from ModSuppport

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So pleased that your surgery is done this time! Wishing you a speedy recovery and praying for a successful surgery, take care of yourself, God bless :pray: :hugs: :bouquet:

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Thanks! I am happy but also nervous! I know that I need to get the compression taken care of, but I also get concerned about the side effects from the surgery which I don’t have now, but may have after. I do remind myself though that it’s more important to have the blood drainage problem from my brain taken care of even if there may be unpleasant side effects. Thanks for keeping up with everyone on this forum! Have a blessed weekend!

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For the most part, I’d say there’s more good than harm that comes from this surgery though the long term outcome of shaving C1 is still out for debate. I think the procedure is new enough there isn’t a huge body of evidence pro or con. For those w/ CCI, it may not be a good idea but otherwise, it seems to be helpful. It may be worth the risk to get blood flow from the brain more normalized so the vascular symptoms can subside.

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For me, I had to get the surgery because I was very aware of the progression and didn’t want it to get so bad that I would be at a point of no return. I am accepting that it may be another year and a half to get my old life back but it’s will worth trying. Life was no fun living with eagle.

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Hi! I understand what you mean about wanting to have the surgery completed before things get worse. I just wanted to check in & see how your recovery is going? I hope that you are continuing to feel better each day. Do you have to go back for post-op appointments?

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Thank you for checking in …
I’m on day 5, and am happy with the healing process. Not much pain or discomfort. I never took opioids only Tylenol and now I’m at only 2x (maybe we will see how I feel today) a day. Always at night so it helps with my sleep. I have not had any big ah ha moments, but I understand it takes time to feel the differences because of inflammation. I have noticed I don’t have eye twitching that I had when sneezing . I do get a weak voice in the morning but comes back stronger as the day progresses. I have been walking as much as I can to keep blood flowing . I get some rest but not all the way through the night. I haven’t had a full night sleep in over 3 years. I’m sore, not horrible, a little swollen. But I am optimistic that I’m going in a positive direction. My first follow up will be Thursday , I’ll get more info then. I’m going to write down questions because In the hospital I just wanted to get home and wasn’t thinking. All in all I’m in a good place I think.

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It sounds like you are doing really well & beginning your healing process in a good way. I think it’s smart to walk as much as you feel like so that you can keep the blood flowing around your system to help with healing. It does sound as though things are moving in the right direction. I hope that you see even more improvement as the inflammation goes down. I’ll be heading up there next week to do the pre-op appointment at Stamford hospital. I’ll check back to see how your recovery is progressing. If you have any advice, please let me know as I will soon be going through what you have just gone through. I’ll keep you in my prayers that your recovery will continue to go well!

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@lilwider -

It’s good to hear you’re doing so well & are being patient as your recover. Symptoms seem to gradually disappear. Sometimes it’s so gradual you don’t notice until they’ve been gone for awhile. At least that was my experience.
It sounds like you’re taking good care of yourself which will also help with healing.
Thank you for your update.

:hugs:

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So glad you are doing well. I hope you are finally able to get a good night’s sleep. Look forward to hearing about your progress as you feel able to report. Take good care.

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Thinking of you, hugs and prayers for a good outcome! :hugs: :pray:

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Yes all is good- totally against my nature, I am taking it slow and going to recover right!

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Thank you for checking in all is doing well. I had my follow up with Dr C & Tobias today they are both very pleased with my recovery, even took the bandage off. I’m staying to get the quick little sharp nerve pains which I say is a good thing because nerves are working. I did have a little weak voice in the morning a few days but better this morning almost normal. My facial numbness is going away little bit each day. Haven’t really had a headache like I was prior to surgery, though I did have a slight one with all the time in the car today. I’m able to eat with no problems. I am only taking Tylenol at night. Swelling isn’t that bad. I had to call Dr C a few days ago to ask about icing because it wasn’t in his discharge papers. They told me it wasn’t necessary but if I wanted to go ahead. I questioned him today about it and he said the trauma of surgery is so deep that I’ve isn’t going to help. Luckily I was doing it because everyone stressed to keep icing, I really and not in any pain and only slight swelling. All in all I’m so happy with my choice in a surgical team and lucky that I was patient to wait for insurance approved the procedure.

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All is good … I still get confused the proper way of responding on here but my update is all good and positive. No pain, no first bite, some weakness in the shoulder, that nerve was wrapped up my tp and had to be moved and re routed. I may need PT for that. We will see . Facial numbness going away day by day. A little weak voice a few days but pretty good this morning. They took the bandage off today. I’m very please so far

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